More than a month before Ariis Knight died alone in hospital, disability advocates had been sounding the alarm about the need for people with disabilities to have access to family or support staff despite COVID-19 hospital restrictions.
“This case was 100 per cent predictable, 100 per cent preventable,” said Tim Louis, a member of the advocacy group and long-time disability activist.
“We put them on notice, the ball was in their court,” he added.
Global News has obtained e-mails between the working group and senior officials from B.C.’s Ministry of Health that show the back-and-forth correspondence spanning a number of weeks.
Louis described the correspondence as “disappointing,” saying the government response was to “defer to others with no commitment to follow up themselves.”
Ariis Knight was non-verbal and lived with cerebral palsy. The only way the 40-year-old could communicate was through eye movements and facial expressions. It was a subtle language that family and support staff say took years to learn.
Knight was admitted to Peach Arch Hospital on April 15 due to vomiting, fever and congestion but staff didn’t believe she had COVID-19. Her support staff were deemed non-essential visitors under provincial pandemic restrictions. Family claim the decision ultimately stripped Knight of her voice.
Days later, she was placed on palliative care and died in hospital.
“The respiratory therapist went on her rounds and when she came back, my sister had passed away,” said David Knight, Ariis’ brother. “My sister literally died alone.”
Louis said there are similar cases across the province and the health ministry needs to communicate a clear directive. He said anyone with a disability who has clear physical or communication challenges should have access to family and support staff in acute care.
He adds that the number of actual cases would be relatively low, and precautions such as proper personal protective equipment for this support should be easy enough to accommodate.
“There will be further deaths absent a simple, clear directive from the provincial health officer,” Louis said.
Global News has asked B.C. provincial health officer Dr. Bonnie Henry for clear guidelines about whether support staff should be accommodated as “essential visitors.”
At her daily press briefing on April 23, Henry said it was her “expectation” that accommodation be made, especially when communication was an issue.
But the next day, Henry provided Global News with a clarification to her statement giving the final say to clinicians.
“I also trust the most responsible clinicians to make the decision about when exceptions are clinically necessary given each individual circumstance,” the statement read.
A request for comment to the Ministry of Health went unanswered Monday.
Louis argued that deferring to clinicians makes this a disability rights issue. He said no one other than the person with the disability or their families should have the right to make that call, and Knight is proof of that.
When Fraser Health was asked why support staff were not deemed “essential visitors,” the health authority stated that it does make exception when communication assistance is needed — but not for Knight.
“In this case, medical staff determined that additional support for communication was not required,” the statement read.
“Obviously they made the wrong decision,” said Louis when asked about Fraser Health’s handling of Knight’s case from a disability rights perspective.
Family say there was no way medical staff could make any determination of Knight’s needs or feelings without someone to interpret her facial cues. Her brother David fears she was trying to speak with medical staff the entire time, but no one could recognize it.
“Unless you knew Ariis communicated with her eyes, and you were focusing on her 100 per cent, you would miss those subtle cues,” he said.
Both family and disability advocates are now asking the provincial government how many more people with disabilities need to die alone like Ariis Knight, until someone finally listens.
“It doesn’t seem like anybody actually wants any real change. It just seems like, ‘We’ll just clean our hands of this and move on,’” said David.